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September 2000 Updates
Bruce's Non-Hodgkin's Lymphoma Story
Saturday, September 2, 2000
The infected part of the wound is looking a little bit better, so Bruce didn't call the colorectal surgeon. We'll wait and see how it looks on Monday.
Bruce was able to mow a small part of the lawn today. After going over a month without being mowed, it sure needs a haircut! Then friends dropped by and we enjoyed their company for 5 hours, and we watched a spectacular lightning storm together...OK, I know this isn't exactly NHL news, but I figured some of you would be checking in for an update. Life goes on! Seize the day!
Tuesday, September 5, 2000
Bruce had the lymph node biopsy done today. He still has use of his arm, which is good news (there was a risk of an important neck muscle being damaged, because of the location of the nodes that were taken). He has a Jackson Pratt Drain (long IV tubing coming out of his neck and ending in a clear container, which I'll need to empty twice a day). So far, the drainage seems to be minimal, which is also good news (the lymph nodes were located near a major lymph vessel. If it had been accidentally nicked, it'd mean Bruce would need more surgery to tie it off). He'll have the drain removed when he sees the surgeon on Thursday. Meanwhile, it's going to be difficult for him to sleep with it. His sleeping positions were already limited because of his rear-end problem.
Unfortunately, I wasn't able to talk to the surgeon after the surgery, so I don't know how many nodes were removed, nor the size of them. Apparently Bruce's onc requested that the nodes be sent out for more than the usual biopsy tests (?), so the surgeon wasn't sure if the results would be back by Thurs. or not. Hopefully, they'll be back!
Bruce & I are overwhelmed by the number of messages in the guest book, and all the love & support being extended to us! Bruce wants to personally write everyone who has signed the book, but it'll probably be awhile until he gets to everyone. It's still difficult for him to sit, and now typing will be even more difficult for him, because of his hurting neck. Please know how very much he appreciates the heartfelt messages though! And so do I!!
Wednesday, September 6, 2000
Bruce just got an unexpected phone call from a doctor's secretary in Boston. Apparently, Bruce's onc has referred him to a lymphoma specialist in Boston! (His appointment with the specialist is for Sept. 25th - hopefully, Bruce's surgical wound will be fully healed by then!) Since we haven't spoken to Bruce's onc since last week, we can't be certain - but we think this means Bruce "might" be able to get Bexxar! :-)
Thursday, September 7, 2000
Bruce saw the surgeon today & he had the drain taken out. Needless to say, Bruce was happy about that! Unfortunately, the incision is infected though, so now Bruce is on antibiotics for that. But, the good side of that is - maybe the antibiotics will clear up the infection in his other surgical wound, as well!
The pathology report still isn't back. As I mentioned above, Bruce's onc. wanted some kind of special testing done, so the tissue had to be sent out. The surgeon said when it has to be sent out like that, it can take a week to get the results, sometimes even a week & a half. He told us to call Monday to see if it's back yet. If it is, we'll see the surgeon again on Monday, to get the results. If it's not back - we'll get the results from Bruce's onc instead. I did ask what type of special testing it was sent out for, but all the surgeon said was, "It's complicated & hard to explain.". I got the impression he didn't fully understand it himself.
The surgeon only removed one lymph node. The largest node went up under the vital muscle & he'd be messing in dangerous territory if he went after it, so he left that one there. There was a 3 cm node he was able to take out easily though, so he took that one. While Bruce was still in surgery, the surgeon called down to pathology to make sure the tissue was large enough for the testing. The pathologist said it was, and he also told the surgeon that after slicing it, it looked consistent with lymphoma. I asked if the pathologist mentioned cell type - he didn't.
Bruce sees the colorectal surgeon tomorrow, so I'll update again tomorrow night.
Friday, September 8, 2000
Bruce saw the colorectal surgeon today and the news isn't good. There's now a pocket where there had previously been healthy tissue, and another area is also suspicious. The doctor is concerned that the lymphoma might be under-mining the wound and that the wound won't finish healing. Bruce will be having more surgery done next Wednesday - the surgeon has extended the time Bruce needs to remain out of work until October 16th.
Monday, September 11, 2000
When Bruce called the surgeon's office this a.m., the biopsy results weren't in yet. However, the secretary said the courier hadn't been there yet today, so they might come in later. When Bruce called again this afternoon, they had just barely come in - the surgeon hadn't even seen them yet. We immediately went in and got a copy of the report. We thought we were SO smart getting the results, before the surgeon or Bruce's onc had even seen them! Ha!! They've changed the &%#$ NHL terminology again!!! The lymphoma is definitely back (no surprise there), and we "think" we've interpreted the NHL type correctly. However, we feel we should wait until we've talked to Bruce's onc, just to make sure, before we say anything. Bruce has an appointment with him on Friday, and because of Bruce's upcoming surgery, we can't see him any sooner than that. I might e-mail him the results though, and see if he responds. Bruce's poor onc! He doesn't know we have the path report, nor does he know we have his e-mail address! *grin*
Tuesday, September 12, 2000
I sent an e-mail to Bruce's onc late last night, with the information from the pathology report, and with a list of questions. He wrote back today & said the questions we had were good ones. He hasn't seen the report yet, so he's going to get back to us in a couple of days. He wants to discuss it with the pathologist first - the way the report is written, what grade of NHL Bruce has, is questionable.
Bruce's surgery is tomorrow, so please say a little prayer for him.
Wednesday, September 13, 2000
Bruce's surgery went well - now we just have to hope and pray that he heals OK, so he can have treatment for the NHL. Although the Seton normally wouldn't be removed this soon, the colorectal surgeon removed it today because of the lymphoma. He also widened the canal to the new pocket, to make packing it easier (I have to pack it twice a day). He told me what supplements Bruce should take to try to induce quicker healing, and he said to try to pack the food into Bruce. It doesn't even have to be nutritious, as long as he consumes lots & lots of calories. The surgeon has done everything he can - the rest is in God's hands. Bruce & I both know though, His are the best hands to be in!
Friday, September 15, 2000
The Flow Cytometry results are confusing because it says Bruce has "a small and intermediate-sized lymphoid population". It doesn't specify whether the small cells are cleaved or not, and we've never heard of "intermediate-sized" cells. Also, it doesn't say whether the cells are follicular or diffuse. So, Bruce's onc consulted with the pathologist at the hospital here. According to him (I think he did a morphologic evaluation), Bruce has predominately small-cleaved cell follicular NHL. For those who don't understand what that means, it's *good* news! Now, we just hope the lymphoma specialist in Boston will agree with that diagnosis!
Tuesday, September 19, 2000
Bruce saw the colorectal surgeon today and so far, so good. He's hopeful that Bruce will be healed in a couple of more weeks. Yea!...The not-so-good news is that Bruce is in a lot of pain. The same day the enlarged lymph nodes first appeared on the left side of his neck, he woke up with a pain on the right side. Behind the ear - in the area of the upper neck/lower skull (the enlarged nodes that appeared on the right side a couple of hours later, were lower and more towards the front.) It was the pain, as much as it was the enlarged lymph nodes, that prompted Bruce to see the doctor that same day. The P.A. said he thought the pain was from a pulled muscle, and it was just coincidence that Bruce had it the same day the enlarged nodes appeared. Since the pain continued, we later mentioned it to the PCP, and last week to Bruce's onc, but no one has been able to feel any enlarged nodes in that area. Lately that pain has been worsening though, and the past few days it's been extremely painful for Bruce. Not even the pain meds he was given after his surgeries, are helping to alleviate it. We mentioned it to the colorectal surgeon today and his first thought was the same as ours has been - maybe internal enlarged nodes are causing the pain? Bruce's onc is away this week and next, but if the pain continues to get worse, Bruce will see his PCP and ask him to order CT scans of the skull & neck. Meanwhile, please be praying that it *is* just a pulled muscle, and that the pain goes away soon!...Bruce's appointment with the lymphoma specialist in Boston, is this coming Monday. We haven't worked out the details for a child sitter (or a goat sitter) yet, but we might spend Monday night there, since his appointment isn't until late in the afternoon. The company he works for has offered to pay for a hotel room for us!!
Wednesday, September 20, 2000
Bruce's neck/skull pain got worse last night and radiated down to his chest, so he saw his PCP today. He said the pain could be caused by:
1. the lymphoma itself
2. enlarged lymph nodes pressing on a muscle or nerve
3. Bruce holding his head funny since the lymph node biopsy
Regardless of what's causing the pain, he thought an anti-inflammatory would help more than the pain killers (the anti-inflammatory *does* seem to be helping!)...The PCP didn't see any sense in ordering CT scans now, since by the time they were done and we had the results, Bruce will have already been to Boston. He said the specialist there will probably want to do more scans anyway...As far as lymph nodes we can "feel" go, Bruce has some new ones on the right side of his neck (the side he has the pain on), and the ones on the left side are still slowly growing. They're not growing at an alarming rate though, like they did in early 1997.
Friday, September 22, 2000
It looks like everything's settled for our trip to Boston! We've decided not to take Bruce's employer up on their generous offer to pay for a hotel room, as we might have to ask them for help later when Bruce is going through treatment. We have made a hotel reservation though - it's not too far from the hospital. We also have a child sitter, a goat sitter, a house sitter, and kennel reservations for the dog. And, we're going to be seeing a friend we met through the Caregiver's e-mail list, while we're in Boston - she lives across the street from the hospital. (Can't wait to see you again Kelly!) Bruce's butt & neck were feeling a lot better today, so we're hopeful he'll be up to the drive on Monday.
Tuesday, September 26, 2000
We're home from Boston! Once we finally met up with our friend Kelly (us trying to find each other, is a story in itself!), we spent a great evening with her. She's still every bit as wonderful as we remember her as being!...We both really liked and were impressed with the specialist. Her approach to choosing a treatment plan aligns with our own low grade NHL philosophy. Which is - to close as few doors as possible! She obviously had given great thought to the detailed treatment plan she proposed for Bruce, and her arguments in favor of it were very convincing. We'll probably take a day or two to do some research and to give it some thought, before we make a commitment - however, we don't want to waste much time. Bruce has enlarged lymph nodes around his heart, as well as fluid around his heart (and possibly lymphoma "within" his heart), so this immediate problem should be taken care of as soon as possible. The problem of his open wound is still an obstacle for most treatment options though, which is yet another reason to go with what she's recommended. Almost as soon as we agree to it, the first step of a long and involved treatment plan will be started...The overall plan is complicated to explain - also, we know from experience that even the best laid treatment plans often fall by the wayside, if the lymphoma behaves in an unexpected manner. Therefore, I won't bother going into detail right now, about this "tentative" treatment plan. Suffice it to say that there will be many different steps involved, and some of them will take place here at home, while other steps will involve lengthily stays in Boston. The coming year will be difficult for Bruce physically, and scary for both of us. But, we both feel optimistic about what the end result will be!...In addition to doing some researching and thinking, during the rest of this week we'll be trying to solve some of the practical problems we'll be facing soon. Also, I'll be doing some major cleaning in anticipation of Bruce's blood counts plummeting (we've been warned - they WILL plummet to life-threateningly low numbers again!). Bruce has an appointment with the colorectal surgeon on Thursday, and we expect that the heart tests he needs to have done, will be scheduled for later this week. We also have a few million other things we need to get done quickly! I'll post when I'm able to though...Again, thank you to everyone for your love, prayers & support!
Thursday, September 28, 2000
Bruce had an appointment with the colorectal surgeon today and things are looking good - no signs of any more pockets, infection, or etc.. Whew! He said I was doing a great job packing Bruce and he trusts my judgment as to when packing can be stopped. We figure I'll only have to do it for a few more days, a week at the most. Then we'll have to wait for the skin to grow over the wound though - we're not sure how long that will take.
Tuesday night, Bruce felt his heart suddenly go out of rhythm and he developed chest pains. The pains didn't radiate to his arm, but they did radiate up to his neck. Bruce has always had a very low blood pressure and pulse, but that night his BP was 134/97 (we've never seen the bottom number go up to even 80 before, normal for him is 60), and his pulse was 118. What scared him the most though was the feeling of his heart dancing erratically in his chest. I felt the pulse in his neck, and it was most definitely VERY much out of rhythm! This went on for about 1 1/2 hours and then, as suddenly as it had started, he felt his heart go back into proper rhythm and his chest pains disappeared. When we took his BP and pulse about 15 minutes later, they were back down to normal. It hasn't happened again since then, but we'll still be glad when treatment can be started! The thought of lymphoma playing games with his heart, isn't a comforting one.
Friday, September 29, 2000
Bruce had an echocardiogram done today, we saw a cardiologist, and then we saw the assistant of Bruce's onc (his onc won't be back from vacation until Monday). Although there is some fluid around Bruce's heart, it's not an excessive amount, so it doesn't need to be drained. Yea! The best news though is, everything else on the echocardiogram looked good! (More than likely tumors pressing on his heart caused the fibrillation he had the other night, or possibly it was just from all the physical stress his body's going through right now). There are a few more tests Bruce needs to have done before he's accepted into the clinical trial, but it looks like he's passed the biggest hurdles. I think all that's left are lung function tests and a gallium scan - possibly another bone marrow biopsy.
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